Thursday, July 31, 2008

Dear Noah.....after watching the closet scene from this movie........

DIARY OF A MAD BLACK WOMAN

you said to me " That is not a very effective way to clean your closet....by tearing up your brand new clothes!"

I thought that was hilarious....and so well-said. I was watching Diary of a Mad Black Woman again last night and you happened to walk in when the women were in the closet ripping up the clothes. Before I had a chance to change the channel you made the comment above to me.

I love you Noah. You are growing like a weed this summer!

Mommy
XOXOXO

Wednesday, July 30, 2008

Dear Noah.......our new library......

is really nice. It is much larger and the kid section is HUGE!!!! One might say they have really catered to the kids and I think that is great! The kids have the newest section and so many more books to choose from ...plus cozy reading areas and play areas.

Here you are in the reading/play area testing out some activity centers.



It has been super hot..today we should get some storms. HOPEFULLY.

We bought school stuff yesterday. You are excited about starting school again.....I am trying to cram some homeschool in the next few weeks......and I also am anxious about you this year as you really won't have someone assigned to you.....not that you did before either.....but in essence you did because someone was always with you.

NOT sure how that will be handled this year as I STILL feel you need that......but you will only be in an inclusive classroom with everyone else and a regular teacher and extra teacher to help kids (including you) who might need it.

I have to say my anxiousness is warranted....and I still feel you will need a parapro to help...and I really don't think they plan on doing that this year. BUT we will see how it goes and surely this inclusive teacher is also like a parapro.....but more skilled to be able to also teach.....we will see......and I will see how you do and how things go. Or maybe they will also HAVE a parapro in addition to the extra teacher. THAT would be best!

We will then meet up for another IEP meeting in 30 days after school starts (Aug 26)if we can make it that long......and go from there.

I LOVE YOU!!

Mommy
XOXOX

Monday, July 28, 2008

Dear Noah......our trip to Muncie, Indiana to see 26 model homes!

You have been waiting for this day......Monday we decided to take a trip to Muncie, Indiana to see 26 model homes.......and you had a ball! It took about an hour or so to get there........and about 1 hour and 45 minutes to go through all 26 homes.

I am so thankful we are both feeling better!

Here you are in one of the jet tubs in one of the many homes we looked at.

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I love you Noah....it will be fun to see where my next day off takes us to!


Mommy
XOXOX

Friday, July 25, 2008

Dear Noah.......you are still running a fever and your throat is really sore.....

We both took a nap Thursday afternoon which was nice. Then you wanted me to try a new recipe from your Rachel Ray cookbook. Of course this would be just for ME to eat...not you....as you would not even think of eating it. BUT we decided on making this:

Spicy Chicken Tacos...

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and I do admit they were very good although I did change the recipe a bit. Here is the recipe:

1 Tablespoon extra virgin olive oil (once around the pan)
1-1/2 pounds boneless skinless chicken breasts cut into very small cubes
1 small onion chopped
1 clove garlic minced
1 cup tomato puree
2 teaspoons chili powder
1 teaspoon ground cumin (I left this out)
handful of coarsely chopped Spanish olives with pimentos (I did not use so many)
a handful of golden raisins (I also left this out)
coarse salt to taste
8 jumbo corn taco shells or flour tortillas for soft tacos

Toppings:
Shredded cheeses, onions tomatoes, lettuce, avocadoes

Heat a big skillet over medium heat, add olive oil and chicken and cook till chicken is brown. Add onion and garlic and cook till onion is soft. Add tomato puree, and spices and olives. (raisins too if you are adding them). Bring to bubble and reduce heat to keep warm till ready to serve.

Toast/warm taco shells according to package instructions.

Scoop filling into shells or tortillas and top with your favorite toppings.

AS Rachel would say.....YUM-O!!!

Thursday, July 24, 2008

Update........

you got up at 4:45 am....needing something cold for your throat. AND more Motrin as you still had a fever but it was much lower....only 100.4.

SO you had 2 Popsicles and Motrin and back to bed you went.

Problem is...now it is only 6:30 or so and you are BACK UP again....thinking you should be up for the day. This is when I try to get a lot of work done while you sleep....so far my starting work at 4:00 a.m. is not really going very well......

Wonderful.

I can tell you are sleepy and tired and still not feeling well....but you failed to follow instructions to only lie on the sofa quietly and watch TV as you were harassing the cat. Now after RE-instruction you are lying quietly on the sofa watching cartoons.....very sleepy-eyed.

I hope and pray you can fall back to sleep for a couple more hours...though you did go to bed a lot earlier than usual (but have still not had your 9-10 hours of sleep yet)

Dear Noah........I hope you feel better soon!


We both went to the doctor yesterday. We both have swollen glands in our necks but yours are much worse than mine. I honestly think I am finally getting better so that is probably why.....and I am an adult. My ears are getting better now but you have otitis media. This will only be the second time you have had any issues with your ears. Our throats are both still pretty red but again yours worse than mine.....and mine is looking so much better than it had. My sores are all gone now I think and I can actually swallow decent. You on the other hand......cannot. You have a fever.....I don't. Last night before bed it was over 102 again. I hope the Motrin kicks it out of your system.

The doctor thinks we both now have sinus infections .....but I really don't think so. I mean NEITHER ONE of us have any nasal symptoms or sinus pressure or symptoms. NO blowing of our noses at any time.....you are not coughing so much at either time. I did cough a lot though. I know we have had postnasal drip....at times.....but little and I know that is what can make the throat sore. But this seems more like a virus or something we picked up.....and then it went through the different stages trying to get out of our system. You had pink eye early on.......then I got it WELL AFTER you had yours......my symptoms affected my ears.......but then finally started to feel better. Your symptoms you had before are all back again in full force.....and now they are affecting your ears. I was dizzy for 2-3 days or so...now you are really dizzy...but I think that is because your ears are messed up. I do still cough up stuff.....you don't.

Anyway..she put us both on stronger antibiotics for TWO weeks. I am already thinking about calling back today to ask for a different antibiotic for you. She gave you a generic form of Bactrim DS and I have heard and read horror stories about it. It is sulfamethoxazole & trimethoprim and well....I don't think I want to subject you to those possible side effects. Why can't we stick with plain old amoxicillin since we know it works for you and you can handle it well? The generic Bactrim contains sulfa and I am allergic to sulfa and I am just not comfortable giving it to you. PLUS the dosage is in question. She is wanting you to take 3-1/2 teaspoons twice per day which seems pretty high for a dose. I just don't feel comfortable so I am going to call and request amoxicillin again. Your rapid strep in the office was negative but you have ALL the symptoms of strep and amoxicillin would kick that better than Bactrim would.

SO anyway......you feel pretty crappy. I feel better than I have in 4 weeks finally....I just hope I did not give all I had back to you.

I guess our house is a house of sickos for right now. I love you very much and I do hope and pray Noah you will feel MUCH MUCH better today when you wake up!

Mommy
XOXOX

Wednesday, July 23, 2008

Dear Noah.......you are sick......sore throat and fever again.....off to the docs we will go today!

You woke up complaining it was hard to swallow again.....and your throat was sore. I also thought you felt like you had a fever and you do. Over 100 degrees already.

I am still not completely over whatever it is I have had....and now you have what you had again....so we are BOTH going to see the doctor today. I know with your heart issues you have to be careful with infections especially ones they said in the mouth and throat....so you will need antibiotics I am sure.

Anyway....I love you....hopefully we will both feel better really soon.....but I have been saying that now for 4 weeks.

Mommy
XOXOXO

Tuesday, July 22, 2008

our pumpking patch today after tremendous severe thunderstorms last night.......so MANY blooms!

Today after a lot of rain last night the pumpkin plant is doing very well. SO MANY new blooms opened up and more green leaves. CLICK TO ENLARGE....this was taken through our kitchen window but is actually pretty clear.....


Dear Noah.....you had 2 spells yesterday with your heart......



out of the blue ....you came rushing into my office last night to tell me your heart was pounding really hard and you thought you were having a "spell." You told me to put my hand on your chest to see......and man......your heart felt like it was going to pound right out of your chest and you had only been sitting before that.

SO we got that heart recording device the hospital gave us to use and recorded your heart sounds to send to the hospital today. You had an episode before that while we were at Goodwill but I forgot to carry that monitor with us. I need to remember to bring it with us everywhere we go....but I have been only using it here at home.

SO from now on it goes wherever we go.

This episode took a long time too before it ended. I was not sure if I should keep recording or not. It only can hold 3 one-minute recordings at a time before sending them in.

SO anyway....I will call this one in today and we will go from there.

I love you Noah! Your heart sounded funny on that machine!

Mommy
XOXOX

Monday, July 21, 2008

Dear Noah......a great buy at the Goodwill Store!


CLICK ON PHOTO TO ENLARGE


Here is a pic of you and Opie enjoying the new set!

Yes.....we found a Thomas the Tank Engine/type activity table....complete with tracks and bridges and signs.....games on the other side include checkers, chutes and ladders, and a place to build Legos.....for....... $4.49!!! You have always wanted one of these....but to be honest....they are just so expensive.....and you have always had a bed you could never roll anything under......but for this price.....and the fact that I can roll it into a hallway closet or somewhere.....WE GOT IT!



I love you....and we also were able to find a nice floor lamp for our living room for 6.49! YEAH....now we have PLENTY of light in there!

I love you Noah.....it was fun having you over for a sleepover in my room this weekend!

kisses!

Mommy
XOXOXOX

Sunday, July 20, 2008

Dear Noah.......our small pumpkin patch is coming up nicely!




First of all thank you to all who are keeping Noah in your prayers. I appreciate that and appreciate my mom passing the word along on her blog which drew many of you to here to read about my son and some of the issues he is facing. I really feel all will be just fine but still appreciate all the prayers anytime any of you feel like offering any up.
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Noah! The 2 pumpkins we set outside earlier this year to decompose naturally in the far backyard are now a new pumpkin patch! The seeds from the prior 2 pumpkins after they deteriorated took root and have grown into a nice (yet small) pumpkin plant with many flowering blooms on it! Providing the squirrels do not eat the small blooms or pumpkins as they come on....we will have some nice pumpkins coming on soon enough! The plant has MANY flowering blooms and some not yet opened. You are excited about this and seeing the progression of growth.

Last night you had a sleepover...in my room....you seemed to sleep really well and so did I. I soak up as much as I can from all the good moments we get to spend together!

I love you!

Mommy
XOXOX

Friday, July 18, 2008

Dear Noah........your cardiology visit.......



First of all Noah I am SO PROUD OF YOU! You did so very well for the EKG AND echocardiogram of your heart today! YEAH!!!!!! Here is a photo of you having your EKG done.....and you laid so still and did not scream and cry and have a fit like the first time 4 years ago.


The doctor today did also hear the murmur.......but she also heard this click/sucking sound and said the fact that you was born with low muscle tone...made her concerned there could also be something wrong with your heart.

So they did an EKG...that was fine.

They did an echocardiogram......and that showed your AORTIC VALVE was not right. There are supposed to be THREE leaflets in the valve to allow blood to flow to the aorta and out to the body. You only have 2 ...she said it looked like 2 of them had fused into one so you were probably born that way.

This means blood is not getting pumped to your body like it should all the time....and sometimes it leaks blood backwards.......etc. She also said that usually someone born with this will have tissue in the aorta itself that will not be right....which means it could eventually NARROW or BULGE OUT.......and that could cause problems. I don't need to mention that the AORTA is the biggest blood carrying artery in the body.

Anyway....we don't know if these are new symptoms for you....or something you were born with, for sure. We don't know if it has progressed or is the same and considered stable for now. They sent home a heart monitor thing I can put over your chest to monitor your heart when you have one of your spells where you say your heart is "pounding" in his chest. We do that if that happens for the next month, recording the beats on a special gadget they loaned us for a month and we call in the recordings.

You go back in 6 months for another ultrasound of your heart. If it looks the same we will monitor your. You will have to be monitored forever however....this will just determine how often. If things are not the same, we will tackle things I guess if and when we have to.

This will have to be monitored....because sometimes it can worsen....and this means surgery to try to correct your valve OR valve REPLACEMENT......and if the aorta itself becomes narrowed or bulges outward...she made it sound like there may not be much they could do for that other than trying to send a balloon via angioplasty up in there to open it up. Not sure if they can do anything if it bulges out..especially where your would be located...that then is considered an aortic aneurysm as far as I know.....and sometimes they can operate and fix it...other times not and you just live with it. This is right up inside your heart....right past the aortic valve....so that is different than when it is an abdominal aortic aneurysm. (She said this would be one of the most serious type of surgeries on the heart....and if Noah did develop a bulge/aneurysm and it ruptured....he would bleed to death instantly and die). Hence the monitoring.

I have some research to do on my end and more questions.

I am not sure if this means OPEN HEART surgery could be possible one day or if they could do it all via like angioplasty..some valve replacement surgery no longer requires open heart. The LOCATION of this may require it though...again I am not sure. I will ask questions and do more research and find out. IF you ever have to have a MECHANICAL valve you would then have to take blood thinner medication the rest of your life. If a tissue one....you could avoid that. Time will tell...
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What bothered me was the doctor kept reaching out and touching my hand and asking me if I was OKAY.....like why? Is this really really horrific news? BAD long-term outcome? Noah has no restrictions now...he can be as physically active as he wants..etc.

If he were to worsen it would be noticeable by him being more fatigued by exercise....which already happens...........shortness of breath or chest pain.....and fainting...because blood would not be getting to his body like it should.

SO.......we are finally home. My throat is sore......I still need to do some work after I make Noah some cookies. I did not do but about 1-1/2 hours before we had to leave this morning. We ran into construction at least 5 times......we still got there in time though.

I am going to pray for you Noah....please pray for him too. I am going to pray God will heal your heart and make it like new again.....so it will work well and be fine forever! You also HAVE to keep your mouth and teeth very clean.....any bacteria or sore throat viruses that travel into your system could settle in your heart causing endocarditis....not a good thing. They do not recommend antibiotics prior to dental procedures anymore she said...or put someone like you on antibiotics long-term...because of the side effects from the antibiotics .....they are greater than the helpfulness of the antibiotics in preventing damage to your heart.

so anyway.......

I love you Noah....forever I will!

mommy
XOXOX

Dear Noah...today is your cardiology visit!

more on this later!

Miracle Run.........on My Lifetime



Cast

* Mary-Louise Parker as Corrine Morgan-Thomas
* Aidan Quinn as Douglas Thomas
* Zac Efron as Steven Thomas
* Bubba Lewis as Phillip Thomas
* Alicia Morton as Jennifer Michaels
* Jake Cherry as Young Steven Thomas
* Jeremy Shada as Young Phillip Thomas

Not sure if anyone has seen this movie before or not. I think it actually came out in 2004. BUT My Lifetime channel on cable is airing the movie. It was on last night and will be on again today Eastern time from 2:00 to 4:00 p.m. If you would really like to see a movie about autism in children and then young adults......I would watch it. I tried to stay up last night to see the entire movie but fell asleep and missed the last hour or so. I will have to watch it again today which I WILL because what I saw was a really good movie.....and did show what it can be like trying to raise a child or 2 with autism. Some classic characteristics are portrayed pretty well I felt and it is based on a true story. Here is a synopsis:

In a flashback, a single mother, Corrine Morgan-Thomas (Mary-Louise Parker) drives her five year old twin boys Steven (Zac Efron) and Phillip (Bubba Lewis) to the doctor's office and learns that they are autistic. Phillip simply repeats what he hears others say, while Steven is completely nonverbal. After leaving the clinic in a very upset mood, she takes the boys shopping for groceries. Her visit to the supermarket is not a pleasant one, as her two boys begin screaming throughout the store and Phillip wets himself, causing others to stare at them. Upon learning about their disability, her live in boyfriend leaves because he knows raising special needs twins will be difficult.

Corrine then moves with her boys to another town and enrolls them in a public school. Their classmates are puzzled by their strange behavior, as well as their teachers. Corrine is then told at a meeting by the principal as well as several psychiatrists that they are not fit for public school, and that they will be sent to a special school. The local mental? hospital then sends a learning therapist to their house in order to teach the boys basic language skills and prepare them for normal society.

With his help and support, Phillip's vocabulary expands, and Steven says his very first word, "pizza". After he is done with teaching the boys, the psychiatrist moves to another city to work with other families (ONLY because FUNDING was cut off). Over the course of several years, the boys flourish verbally, socially, and academically.

However, some of their autistic characteristics still remain, as they have somewhat nasal, robot-like voices, engage in self-injurious habits, and are very sensitive to loud and sudden noises. They also have an obsession with Rocky from the Rocky films. On their first day of high school, Steven develops a crush on a girl named Jennifer (Alicia Morton). While chatting with Phillip in the bathroom, Steven talks about Jeniffer and says "Maybe she'll be my girlfriend." Another boy, an older boy with long hair mocks Steven and pushes him, causing both of them to start screaming and crying. Corrine is called to the school from work by their special ed teacher, and convinces the boys to come out of the bathroom and go to lunch.

At lunch, Jennifer decides to sit with the two boys. Steven sees several joggers outside from the hallway and decides to join the cross country team. Before the race, Steven sees Jennifer kiss another guy, an Asian boy with a Mohawk. Steven is hurt and confused. Corinne finds Steven sitting down on the grass looking sad, and she finds a love poem in his hands that Steven wrote for Jennifer. Then, Steven realizes he has to move on. He wins the first race he runs in and Phillip gets into a special music school by playing his newfound guitar talent over the phone. Corrine then finds The Miracle Run Foundation for research into autism. Steven gives a speech about how his mother helped him and his brother with their autism.


OKAY I changed the parts in the above where they called the kids MENTALLY ILL and the hospital they said was a MENTAL hospital where a PSYCHIATRIST was sent out to work with the boys. I think they got that wrong as we know autism does not automatically equate mental illness at all and if I remember correctly the therapist was not from a mental hospital or a psychiatrist.

Anyway.....the movie was actually pretty decent and I felt it portrayed some common characteristics of kids with autism very well. AND some of the experiences the mother experienced, also pretty common, were also very well portrayed. So you might want to give it a watch today if you have the channel and can see it.



AND actually if you do not have My Lifetime....you can apparently see the entire movie right now on YOU TUBE...... starting at this link and then start with Miracle Run PART ONE...there are 9 parts to see the entire movie....but it is worth it.

Miracle Run on You Tube

here is a trailer from a fan



Here is what the twins look like now:




For more information on the Miracle Run Foundation please go here:

Miracle Run Foundation Info

Monday, July 14, 2008

Dear Noah.......sorry I still feel pretty crappy.....

I know it is tough for you.....cause I don't feel like doing anything more than the basic stuff and even that is hard for me right now. Today I had to take a long nap after mowing......I think I had pinkeye and mowing did not make my throat/chest/cough feel any better. It really exhausted me.

Here is a clip of you at grandma and grandpa L's in their backyard.....and noticing NEW GROWTH which you said they would be "excited about!"



I love you Noah.....hopefully tomorrow I will feel even better yet.

Mommy
XOXOX

Tuesday, July 08, 2008

Dear Noah.......Springfield, Ohio




Well we decided to take a trip to the Antique Malls in Springfield, Ohio on Monday. I took you to Cracker Barrel for breakfast and then we began our journey.

I have to say you were very sweet yesterday and we had a good time visiting the malls. You picked out a school bus at one of the malls.....I got a Bible.

We stopped at Grandma C's house on the way back home. You helped water the flowers before going inside last night once we got home. All in all a pretty nice day though the weather got pretty hot and muggy during the daytime.

I cannot believe it is the SECOND week in July already. I need to crack the whip on some home school studies or you won't even start anything before school resumes at the end of August!

I love you Noah.......your cousin Audrey DID come to spend the day Sunday......but ended up missing her mother about midnight that night...and wanted to go home. You had a very difficult time handling that.......but you did finally calm down and went on to bed while she waited for her mom to come pick her up and take her home. You were sad because you think of her as your FRIEND and really wanted to spend the day with her on Monday going to the pool, etc. We will have to see how things work out another time.



Mommy
XOXOX

Saturday, July 05, 2008

Dear Noah.....

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Civil War Section at Woodland Hills Cemetery, Dayton, OH

Last Sunday we went to my parents' house for birthday celebrations for me and my sister. Her birthday was June 27 and mine July 5. We try to cram several birthdays onto a holiday when we can. That morning started out rough.....I got upset about the cat doing something here in the house. I admit I screwed up and cussed......and this upset you.....and you said some things to me that really surprised me and hurt me.....such as you wish you had a gun because you would kill me if I said another bad word.....etc. What does one say to that? You lost it......I mean lost it. So we were not going to go.....I figured you needed some cooling down time....and then I realized it was mostly me that started it all to begin with....you were only getting upset because of my yelling and occasional cuss word (IN MY BEDROOM with the door closed).....and you were afraid you were going to miss out on the party and seeing your cousins.etc. SO I decided to go after all....

We had a long talk before we went......and we went over everything.....and the only reason I am rehasing PART of it here is to there will be documentation of this for you or anyone else going through something similar one day. I know kids say things when upset they do not always mean....and as they get older and wiser they regret some of those things....so I am really trying to not take it personal anymore and I think I did finally successfully get past that!

I did take off Friday the 4th and today the 5th for my birthday......so we could spend time together and so special things. Your cousin Audrey was to come over on Sunday and spend the night into Monday......but I went and got sick.....so we have not really been doing anything or going anywhere.

we DID make it to Cracker Barrel on Monday after my doctor's appointment....and then to Woodland Hills Cemetery and then to your cousin's house....and you got Domino's pizza for supper...something you have not had now for at least a month.

I thought it was sweet when out of the blue you walked back into the kitchen to tell me THANK YOU for getting you the Domino's pizza.....all without any prompting on my part.

I love you Noah.....I feel bad for you that I feel like crap and cannot do anything with you after all these past couple of days. I got some medicine today so hopefully I will start to feel better soon!

Mommy
XOXOXOX

Tuesday, July 01, 2008

Dear Noah.......it has been quite emotional around here lately.....

I will post more about it later....but you have had a very trying past few days.

Still love you......

Mommy

XOXOX